Oh wow, I cannot imagine getting by on one mestinon per day. Can I ask what kind of side effects you're having with it? I had some stomach issues at first and some very severe dizziness when I first started to increase my dosages, but my neuro gave me a similar "tough it out, this is a good drug" talk. In my case, I'm really glad I stuck with my mestinon, because I did adjust to the side effects that I was experiencing and it's given me, at the right dosage, a pretty decent quality of life. Going without mestinon sounds like it could be really dangerous, or at least would be for me.

So sorry you're dealing with this.

How long have you been on mestinon.? It took me about two weeks to get past the side effects. Stomach and intestinal cramping and diarrhea being the main ones. You need to have a steady dose in order to benefit from it. I had to cut my dose down and take more often in order to avoid the side effects and the high and low energy levels. Hope you get it figured out. I know from experience that if you stop taking it, you will have to start the break in period over again.

I have been taking it for 3 months. I started at 30 mg 4x then he increased it to 60mg. The side effects have never ended and it gets worse with each dose. I have always had gastro problems but this is horrible.

I cannot to this day take 60 mg in one dose without side effects. I also have an impaired digestive system. So I take 30mg every two hours during waking hours.
You may need to adjust your dose so that you can get some benefit without such harsh side effects.
How much and how often you take is an individual thing as long as you don't go over the recommended dose.

I think I'm just going to try the half dose every 3 or 4 hours for now. Otherwise I won't make it through the day! Usually the second dose gets me going, but digestive sick and the third makes me awful all over.
I really appreciate your encouragement and suggestions!

You need a new neuro. The blood tests are not sufficient . Plenty of seronegatives get steroids. Me, for one. Mestinon will not stop progression. I hate Mestinon but could not live a day without it. Try to give Mestinon time. So so sorry.

My dr first prescribed me 60 mg 4x's a day but it made me twitch so bad so after reading on here about people playing around with taking less and closer together I asked my Neuro and he said that is just fine so I did that. I found it was perfect and really helped strengthen my lungs, eyes, throat and limbs.

I now take 1 whole (60 mg) in am then 1/2 (30 mg) about 3 1/2 hours later then 1/2 about every 3 hours after that and I have very little twitching now and it helps me within 45 min.

I never had stomach issues with it just horrible twitching all over especially in my mouth and neck. The dr did end up putting me on time release at night (because I wake up a lot gasping for air) but the time release was horrible for me, it was the worst night of my life, I think I was overdosed, I was struggling with my breathing and I could tell every time It released because I would twitch like crazy. I got really weak also. I am so sensitive to any meds so I will never do the time release again.

It is amazing though once I found the right dose for me Mestinon became my best friend. Don't take an all or nothing answer from your dr. There are so many more options. Good luck with everything.

So sorry to read of your struggles. I could not get a grasp on Mestinon dosage. Over half the time, a 60 mg dose would do nothing. I switched to 180 mg time release, two per day, and got marked improvement. I have to take it with a meal, or get stomach cramps. Please keep us updated, and wishing you all the best going forward.

Sorry you are suffering.
I think wether or not we can keep up our house is a big deal.
I remember when I couldn't make potato salad for the summer holiday and I was devestated. And I remember when I couldn't change the sheets on the beds. I never realized how important something that small was.
I believe wellness is functioning such as driving, cooking, cleaning, ability to be with family and friends and doing what is most important....your art. I had to leave my career of teaching special needs children but that is very physically demanding, but I do consider my self fortunate now.
I believe you can expect much more out of life with proper treatment.

I hope you have improvement by taking a half dose more frequently.
I agree that you may need to look for a new neuro. I can't imagine that a single dose of Mestinon could be of benefit with the symptoms you describe.

Please take care.
Larissa

I'm taking time release AM & PM, and the AM dose always created gastro problems. Was advised to take probiotics and Immodium, and that seems to have helped (or maybe my body's adapting). You might ask about those.

Hope it works out for you.

When first diagnosed I was taking 30mg every four hours and it was helping. The Dr. increased it to 60x4 and I had bad side effects. The Dr. claimed it can't be the mestinon. Tried timespan and it was worse. Again it can't be the mestinon. Went to a specialist and again can't be the mestinon. Sent me to a gastro and after four visits and an endoscopy said there's nothing he could do, nothing wrong. This went on for a year till I finally figured out to just take 30mg at a time. It's been two years now and that's what I take, still get some side effects but definitely controllable and helps with the MG. Also found a new neuro who gets it. Find yourself a new doctor and see if you can handle lower doses of the mestinon more often or as you need it. As long as you are sure you have mg the mestinon should help otherwise it will just make you sick.
Hope everything works out for you.
Al

You all are a big help. I have just had the one dose of 60 today (it is now 5pm) and I am worthless now. My double vision is really bad so I am having trouble typing this.

I can now tell the doctor i tried his way, but now it is time to try the small dose throughout the waking hours way. I don't think I can go to any other doctor because there are no local ones that take my high risk insurance in town. This doctor is at Chapel Hill and is well known. He seems very sensitive in person, but when I call I only get an administrative assistant (who is very nice) who takes notes and emails him. He emails her and she calls me back. I don't want to insult her, but think it might be time to insist on speaking directly to a nurse or doctor. They are 3.5 hours away.

I just need to know that I am not asking for lots of attention when there is only so much they can do. I was actually hoping for meds to counter the side effects since mestinon does seem to help besides the side effects.

The steroids cannot be used because of past adverse reactions and the need to keep my weight down for my crazy heart. I can't blame them for that.

Mestinon works differently in all of us of course. That is why we have studies and for most, all of these dosages mentioned here should be easily tolerated. Some people can take 1000mg a day of Mestinon! If that is the case, they need treatment in a big way!

Note: I have had a MG panel done and I tested positive for the standard antibodies against the AChR

I once was getting close to 1000mg a day of mestinon while avoiding steroids and I used IVIG to push MG back while waiting for Cellcept to work its magic on me. Cellcept has done what it was tested proven to do for antibody positive people. It has helped me to improve over time and reduce the need for mestinon.

I know I am stronger with Mestinon. Today I would consider myself very stable. As an example of what I mean about being stronger let me explain...I currently can get some energy from my food after taking cellcept in the morning also and before lunch I can do 17 pushups with no mestinon taken. Doing the same routine and taking 60mg of mestinon a couple hours after I take cellcept, I can do 25-30 pushups instead. This has been proven over and over. I feel it is now my mark for complete remission (cellcept induced) and then I will take it from there to hit another goal.

Problem is, I ain't getting any younger and so I try to exercise as much as possible. I fail in the "much as possible" department, but I do stay active, get out there to be involved, and will drop and do pushups at any given time (when nobody is watching).

Be well

Troy

Then it is time to request Imuran or Cellcept. :) I have found that I care the most about my prognosis. Do not worry that you are too squeaky a wheel.